The Medicine of Ambitious Gods: Medically vital but uninsured?

This month marked a victory for humanity and our country's ability to acknowledge the worth and value of people of color. For one family it marks another milestone in the journey of a story that has spanned almost a century. It should also be a reminder to all women of color, to pay attention to the progress that has been made in the fields of medicine and healthcare and how far we still have to go.

The story begins in the south, as these stories often do; with a little girl in Roanoke Virginia. Loretta Pleasant was born on August 1, 1920; four years before my own grandparents married. In the next thirty years, similar to my grandparents, she would get older, get married, migrate to the "big city" and become the mother of five. A story not so unfamiliar until January 1951. At the age of 31, Loretta, now known as Henrietta Lacks, went to Johns Hopkins Hospital in Baltimore Maryland because of a "knot inside her womb." Initially misdiagnosed, Henrietta would eventually find out she was suffering from cervical cancer. Ten months later she would both die and be immortalized.

What happened next is both shameful and prolific. While at Johns Hopkins, the only hospital in the area that would treat African Americans at the time, two samples were taken from Henrietta's body without her consent, a healthy one and a cancerous one. What happened to those cells, now called “HeLa” cells, would change the course of modern science, the biotech industry, cosmetology, and disease control. But more than that, it would forever be an example of what is inherently wrong with discriminatory medicine and the importance of having equal access to healthcare.

From the moment she stepped into the hospital to the moment she died, Henrietta was treated differently. Although it started with the initial misdiagnosis, continued with the out-patient treatment she received for a tumor that would eventually metastasize throughout her entire body, it was more than that. What I am referring to, is the mentality that lead to the theft and harvesting of her personal genetic material by her doctor, Dr. George Otto Gey, without a second thought regarding the prerogative or written consent of her family. Henrietta was never told he was collecting cells and she never consented to being a donor. Today hundreds of medical discoveries have been made with the use of that material, countless awards and accomplishments celebrated on the foundation of theft. Additionally, billions and billions of dollars have been made by corporations, doctors and scientists previously without the knowledge or consent of the Lacks family. All because of the ambitious nature of one doctor who simply did not have value for Henrietta's body or her family's permission to use her cells for science.

Henrietta Lacks

Henrietta's husband and children wouldn't find out about those cells until 25 years later, when researchers from Johns Hopkins decided to track down Henrietta's family to do research on them to learn more about HeLa and have never been compensated.

When Henrietta's children learned of HeLa, they were consumed with questions: Had scientists killed their mother to harvest her cells? Were clones of their mother walking the streets of cities around the world? And if Henrietta was so vital to medicine, why couldn't they afford health insurance? - The Immortal Life of Henritta Lacks by Rebecca Skloot

What makes these actions even more devastating, is at the same time in history African Americans could not donate blood or many register to vote. At the same time our government through the Tuskegee Syphilis Experiment continued to intentionally infect African American men in Alabama. While African American women and men in states like North Carolina were undergoing a disproportionate number of forced sterilizations based on racial stereotypes and eugenicide, America saw the birth of the modern biotech industry from the cells of Henrietta Lacks.

But this type of treatment was not unheard of. For decades, long before health insurance, this sort of treatment was typical of African American women, especially during slavery and the years following the Civil War. For example, in South Carolina from 1845-1849 -- a little over a century before HeLa cells were discovered -- Dr. James Marion Sims operated on ten nameless enslaved women over thirty times without anesthesia. Most of the techniques and instruments he developed are now what we refer to as gynecology. Dr. Sims is celebrated for his achievements as the father of gynecology because of techniques developed from the pain, humiliation, and in several cases the deaths of these women.

In the case of Henrietta Lacks, for the first time in history human cells could live outside the human body and it was from these particular cells that came from an African American woman born to a poor sharecropper in Roanoke, Virginia that changed the world. Not withstanding the medical miracle, on a very real level, what happened to Henrietta Lacks exposes a trend of treatment of minorities and poor Americans within medicine and why we should be paying attention to the lack of access to healthcare. Discriminatory trends are still alive today, manifesting in the disproportionate number of minorities who lack access to health insurance and adequate healthcare. For what people of color have done for medicine it seems illogical that millions still suffer at the hands of preventable and treatable illnesses. Today African American women are still disparately affected by gynecologic cancers that could be detected through preventive care and cancer screenings. In addition, studies show that approximately 20% of all African Americans in the United States under the age of 65 lack health insurance and many simply cannot afford preventive care and cancer screening. The Lacks family said it best, "....And if Henrietta was so vital to medicine, why couldn't they (the family) afford health insurance?"

That is why healthcare reform and the implementation of "Obamacare" should resonate so profoundly in the African American community. When President Barack Obama took office our country decided to make a giant leap in the right direction in regards to at least the access and affordability of healthcare. In 2010, our country passed the Patient Protection and Affordable Care Act, commonly referred to as Obamacare, to put stronger controls on the healthcare industry and to make our healthcare industry more accessible, affordable and in turn equitable to all Americans. Unfortunately, just when Americans may gain a modicum of control over their healthcare there are new ambitious gods, those who would rather see the government shutdown than make improvements on an industry the continues to be inaccessible, overpriced and elusive. In fact, since the passage of Obamacare there have been over 40 votes to repeal the law without a single alternative to fix our broken healthcare system; still leaving many American families without the healthcare they need or deserve. These actions clearly reflect a detrimental lack of understanding and appreciation for the value of the health of all Americans. In addition, state and local governments continue to defund or underfund healthcare services in majority minority areas.

Ask yourself, how different is the closing down of health clinics in lower income urban neighborhoods or shutting down medical providers in low-income rural areas because of disproportionate government funding than having only one hospital in the vicinity that will treat African Americans? How far from the truth is it, that people of color are still disproportionately affected by the inability to afford lifesaving medical treatments, or denied treatments because they don't have coverage that includes essential benefits and preventative care. Now, four years after the passage of Obamacare many in Congress continue to undermine the hard fought improvements to healthcare. In many states Governors are still refusing to expand Medicaid to include millions of uninsured Americans. While health departments are intentionally mis-educating their constituents and legislators are shutting down medical facilities and access to women's wellness services. Now ask yourself, did you know all of that before you read this blog?

Although what happened to Henrietta Lacks may seem extreme to many, stories of inaccessibility to healthcare and lack of insurance are plentiful. How many women have there been in history affected by medicine's ambitious gods making decisions on the value of our lives and how many more most there be before our country realizes the dangers of a discriminatory healthcare system in any form? Now, more than ever, women of color, who suffer from higher rates of cancer, heart disease and ovarian cysts, should demand that healthcare accessibility and equity continue to move in the right direction. At the same time, as African Americans -- who are disproportionately dying of preventable and treatable illnesses-- we should continue to reflect back on where we have come from and continue to push forward to where we need to go.

The views and opinions expressed in this post are those of the author(s) and do not necessarily reflect those of MomsRising.org.

MomsRising.org strongly encourages our readers to post comments in response to blog posts. We value diversity of opinions and perspectives. Our goals for this space are to be educational, thought-provoking, and respectful. So we actively moderate comments and we reserve the right to edit or remove comments that undermine these goals. Thanks!